Co-development of an outcome measure for adults who are nil by mouth
Research type
Research Study
Full title
The co-development of a patient reported outcome measure for adults who are nil by mouth and require enteral feeding.
IRAS ID
344197
Contact name
Elizabeth Hepper
Contact email
Sponsor organisation
Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
A wide range of health conditions including mouth and throat cancer, stroke and difficulties digesting food can lead to people no longer being able to eat and drink. Instead, nutrition and hydration are delivered through a feeding tube directly into the stomach. In the United Kingdom, over 23000 adults have a feeding tube. They may need it for several months or for the rest of their lives.
Currently, there isn’t a way to measure is a structured way, how being no longer able to eat and drink affects someone. We don’t know if services are meeting the needs of these people.
This study aims to identify the impact of being no longer able to eat and drink on the quality of life of adults with a range of underlying conditions. We will invite patients and caregivers from NHS services and partner charities to take part in interviews. People with communication difficulties will be supported to participate on an individual basis. We will also survey healthcare professionals for their views through healthcare services and professional bodies.
Using the interview and survey responses, we will work with patients, caregivers and healthcare professionals to co-develop a questionnaire. The questionnaire will measure how someone’s quality of life is affected by being nil by mouth (NBM). Through a short series of co-development groups with patients, caregivers and healthcare professionals, items will be identified for the questionnaire.
We will then begin testing the questionnaire by asking a range of patients to complete the questionnaire and describe their experience of completing the questionnaire. We will also ask whether they found it easy to understand and for feedback about the length and format of the questionnaire. This study will be concluded by August 2028.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
26/NW/0044
Date of REC Opinion
19 Feb 2026
REC opinion
Favourable Opinion